Advance Care Planning for Alzheimer’s Disease or Dementia

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People with dementia or Alzheimer’s disease are ineligible to request medication under death with dignity laws because their judgment or decision-making is impaired by the illness; if a person is in early stages of these illnesses without cognitive impairment and does not have another disease that is causing a terminal illness, s/he does not qualify due to not having a terminal diagnosis.

While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control.

Our friends at End of Life Washington have developed an advance directive called the Alzheimer’s Disease and Dementia Mental Health Advance Directive. It is the first of its kind focused on these specific challenges. With a similar purpose as a living will, the Alzheimer’s and Dementia Advance Directive aims to help people make their intentions known to prepare for the time when they are no longer able to communicate.

Standard vs. Alzheimer’s/Dementia Advance Directive

Unlike the standard advance healthcare directive, which specifies what medical actions should be undertaken if a person is too ill or incapacitated to make decisions, the Alzheimer’s directive covers decisions involving day-to-day choices such as where s/he would like to be treated, who the preferred caregiver is, and who’s authorized to be his/her healthcare agent. The directive ranks health care institutions in order of preference, and it even includes a space to discuss wishes pertaining to pet care.

The Alzheimer’s directive is more about the challenges of living with Alzheimer’s, such as where are you going to live, how your care is going to be paid for, what to do with your pets, when to stop driving, what happens when you can no longer have intimate relations with your spouse or partner, not medical issues.

—Robb Miller, Former Executive Director, End of Life Washington

Like all directives, this one cannot account for every care decision that may arise, so we suggest writing a personal statement, describing your history, values (including religious beliefs), and any other information that will help people understand or at least have a sense of who the directive’s author is. This allows caregivers to make informed decisions based on more complete information and allows them to fill in the gaps in unanticipated situations.

Patient-Centered Language

The instructions include the advice:

“This is your document. When completed, it should express your wishes. Cross out sections, sentences, or words with which you don’t agree.”

One of the things this directive does well is reinforce that the person making this document doesn’t want their wishes to be ignored, doesn’t want someone else’s judgment substituted for their own.

No one can precisely predict the exact life changes that’ll occur during the course of a mental decline. No one can predict the type of health care setting he/she will need or how quickly the disease will progress.

[T]here is just no downside to documenting your wishes. Making advanced directives, whether medical or Alzheimer’s, is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family.

—Robb Miller

History of the Alzheimer’s and Dementia Directive

A number of factors contributed to the creation of this directive. In 2003, Washington State enacted RCW 71.32, which allowed for the creation of mental health advance directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimer’s and dementia.

In 2010, Brodoff published the article “Planning For Alzheimer’s Disease with Mental Health Advance Directives” in the Elder Law Journal. The article describes the life changes that accompany Alzheimer’s disease progression, such as alterations in intimate relationships and the inability to engage in actives of daily life such as driving. Brodoff also described the practice of Medicaid divorces, in which people divorce to protect assets due to incredibly expensive Alzheimer’s care. Brodoff concluded with a suggestion for a personal advance directive addressing these scenarios. She then partnered with Robb Miller to co-author the directive.